Manny's Developmental Profile Results

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"Sometimes the lights are shining on me....

...Other times I can barely see."

I haven't mentioned Jake's horse riding lessons in a while. Recently he met a sweet Shetland pony rescue named Smokey. Its hard to say if Jake enjoys riding Smokey as much as he likes riding Red, but for a worried mom and a child with low tone and less-than-perfect balance, Smokey is the right size. More importantly, Smokey adores Jake, and seemed to from the start. Smokey has a shifty past, and was rescued initially and found to be neglected. He was rehabilitated by an individual before being brought to Storybook Farm and put up for adoption. I had started the whole horse-riding lesson endeavor with the intention of looking into adoption, and the time seemed right. Smokey is now part of our family.


Ironically, the day that I went to work out the adoption details with Crystal, Jake fell off of Smokey. He wasn't thrown at all, in fact, Jake went to slip off of Smokey's right side and Smokey moved quickly to try to correct Jake's seat and Jake fell hard off of Smokey's right side, landing hard on his back on the packed gravel. Luckily he was wearing a helmet. He was scared and cried, but recovered quickly, as Jake usually does. He probably won't get on Smokey (and definitely not until Friday when I plan to go to tractor supply and get a perfect fitting helmet) for a while, but we will be using our time at the farm to spend time with Smokey and make sure that he enjoys our visits and is easy to catch..so.. we'll bring him treats and take him for lead-walks around the farm.

It shouldn't be hard to make Smokey love us, as, like I said before, he already loves and has a huge interest in Jake. After Jake fell Smokey just couldn't keep his nose off of him, making sure that he was OK. It was just simply meant to be.

As a long-time dog handler, I am very interested in getting to know ponies a bit more. The groomer in me wants to work on his coat a little too *wink.*

A Manny update:
After the session with Cindy last week, where Cindy expressed, among her other concerns, that Manny seemed feverish, Manny got really really sick. By Thursday Steve wanted to take him to the doctor. It turns out that he had Herpangina the hand-mouth-foot disease virus. He has been very sick all week, and eventually broke out in a rash that warranted a call to the traige nurse. It turns out, he had both the HMF virus AND Roseola as well. Life kinda sucks when you realize that your child can have two childhood diseases at one time. Jake was a good big brother to his sick baby brother.

He has been feeling so much better the last 2 days, eating and not in so much pain. He has actually been talking a bit and happily immitating his father saying "Shit" today was, in some way, a "good" sign. I haven't managed to move back to the "hopeful" state, but I am really really trying.

Tomorrow we have a fun-filled day planned with OT early in the morning followed by a trip to the aquarium with a friend we haven't seen in ages. Should be fun after a full week of sicky babies and worry.

OT today.

I suppose I may end up changing the name of this blog to "our sons" or "Manny and Jake."

Manny went with us to OT today since Lacy has the flu and had to cancel. I was actually hoping that he would and planning for it and threw some sort of weird tantrum when Steve said that he would watch Manny while he took Jake. I'm really just completely out of sorts the past few days and probably very hard to talk to for just about anyone, not to mention hard to live with for my family.

Jake has gone from acting amazingly "normal" for several months to being the stimming, withdrawn child that I knew before the holidays. Many of the behaviors that I thought had disappeared have returned, which has again seemed to render OT sessions useless as being "for him" and more of a counseling and brainstorming session for Cindy and I. Because of this (well, I was probably going to do it anyway) I mentioned Manny's lack of speech to Cindy. She wanted to see him.

Her assessment was a summary of what I've been feeling. His low tone and lack of physical skills are beginning to border on "delayed." He does not stay "with you" on interactions as long as you like, and the screeching and screaming during interactions does seem to be a response to frustration at not being able to speak in any basic manner. The loss of speech is definitely a red flag, as is some of his behaviors such as putting his hand on my hand and manipulating it in order to get me to perform a task. She seems just as concerned as I do, or at least thats what I got, and said that there isn't much that we can do about it at this point except to file away this info in case we need it later and try to do activities to get him back. She gave me a Developmental profile to fill out that she will score. She highly suggested that Steve and I fill it out together as well. The particular profile that she gave me, when scored, will give her information and activities to print out for me.

I honestly just don't know how I feel right now. As I type I just shoved the Dev. profile under some other things on my desk so that I can't see it because at this moment its physically painful to look at. I want to say something positive like "we'll just take it one day at a time" but I'm not feeling that right now. I could be brutally honest, but I'm even too tired to do that.

Numb

I have been avoiding making this post for the past few days simply because I am having a lot of trouble voicing what I want to say about it. I am dealing with the fear/realization/gut feeling that Manny has suddenly regressed. It started with him having a few extremely fussy days that seemed to be attributed to his eye teeth bothering him something horrible complete with a low-grade fever. He was impossible for the babysitter to handle, and frankly, me too. But well, 17 months old is a hard time for any toddler.

Only in the last 2 days or so have I realized that Manny has lost all of the limited speech that he had. He has at one time or another said "Dada, Mama, dog, tickle tickle, uh oh" and a few others I can't think of right now. I can't remember the last time in the past little while he has said anything, and for the past two days have been unable to get him to say anything save "GOoooooo" when he refers to the swing.

Also, he has become obsessed with the wii and constantly brings the remote to me wanting me to play it. He will sit forever and watch and pitch a terrible tantrum if I stop. It is one of the very few things that he will do lately that doesn't involve me carrying him around. There are a few other activities that he does that are odd, but its not worth explaining right now. I'm watching him closely and that sinking feeling just won't go away.

Basically he has been tantrumey and impossible to engage or console for very long for about a week and a half now and his muscle tone doesn't seem to be improving at all, if not that it is slightly worse, but its the loss of speech that has me absolutely reeling. I am just not prepared to work on getting everyone on board, yet again, and starting the whole process... starting with getting my family and friends to listen to me (which I don't feel like I've accomplished yet with Jake). What I have mentioned is met with even more denial or just is just plain unacknowledged. I am just absolutely terrified and I don't know how to process it. I only hope that I am VERY very very wrong about this.

Update

Well.. I haven't blogged in a while. Maybe I've had less to rant about this month(unless you count the fact that a nasty virus has run through our family yet a third time in 6 weeks, but I'm kind of getting used to cleaning up puke).

Jake has yet again begun to make giant leaps with his language and social skills as well as his physical abilities. Lacy comes and spends three mornings per week at our house, when everyone is well, and brings her little guy Maddox who is only one month older than Jake. Lacy has tons of energy and plays with the boys all morning. After lunch they all watch a movie while Manny naps. I've noticed Jake modeling Maddox's behavior a bit for example: sitting and looking at a book while the movie plays instead of laying on his back with his feet on something. Stimming has really reduced in frequency and intensity since we started doing floortime, almost to the point that, when he does it, I know that he is just tired and it isn't so much of an issue anymore.

I have decided that Disney's Toy Story and the sequal must be the best movies in the world to show a 3 year old (almost four, how did that happen?) autistic child. Its a pretty good movie if you're an adult too. I think that it adds an element of magic to the idea of toys, and inside the movie the children are constantly modeling pretend play. Since getting Jake his Buzz doll, he constantly pretends... and not just mimicing the movie, but deciding that Buzz is hungry and such. Yesterday he got a Woody doll as well, and Buzz and Woody have some interesting conversations. I have systematically removed almost all of the noise-making electronic toys from the house (yeah, I know, Buzz and Woody say three phrases each, but thats different). When Jake wants to withdraw he will grab something that he can do by himself, like a talking book toy. Its funny when I think about how parents of typical children (and me too, in the past) look for toys that will keep their children occupied by themselves... and how I look for the opposite. Instead of video games and leap frog stuff we have a ball pit and a swing. Lately I remind Jake's friends and family: "My kids need PEOPLE to play with not THINGS to play with."

No matter what is helping Jake the most these days; School, Lacy, OT, it is really nice to see such vast improvement. Yesterday we had the best OT session, in my opinion, that we've had so far. Although Jake is still going from one thing to another fairly quickly, Cindy was able to have a very long interaction with him and his brother sitting at the table and pretending to eat foods that were pictured on cards. When given a card with popcorn Jake says "Popcorn machine my home," telling Cindy that he has an air popper at home that we use almost every night. He is improving his ability to talk about and sequence events. He still does it in an odd way, and every sentence lilts up like a question. For instance, after OT yesterday he says "Fun go see Cindy? Fun swing? Fun table picnic? Clean up?? ALL DONE!" In this way I can actually gain some insight as to what goes on during his school day. Granted, the teachers send me a little note every day, but it can be scary to a parent of a verbally delayed child to send them off every day and get absolutely no feedback from the horses mouth. When Jake gets off the bus, he will say "Fun school day? Fun puzzles? Play computer.. Fun.. snack time?" It really makes my heart soar. He also has a funny attitude lately, and at lunch time yesterday at a pizza restaurant he pulled on my shoulder to get my attention, and said, very matter of factly "We need some Pizza!"



Physically Jake is getting stronger and gaining more muscle tone and motor control. He still falls a lot but he falls less. He's able to do tasks such as taking off his socks and going up and down stairs more efficiently. The other day we went to an inflateable playground place because a group of moms who I like were going there. I was very apprehensive since we had had a bad experience with one of those places about 18 months ago that had caused Jake to be terrified of inflateables in any situation (such as a craft fair or something). Much to my delight he loved even the biggest slides. I honestly didn't think that he could PHYSICALLY climb the big ones, but well, here's the video to prove it. Watching it myself, it doesn't even look like my child doing that.



At the bottom he says "I'm swimmin!" He was pretending to be sliding into a pool. I think once that Jake realized how pretending worked, and that anything can be anything that he wants, it has really brought a lot of joy into his life.

Meanwhile, Manny is still growing and is beginning to walk and take a few tentative steps, although he still seems well behind other children his age on most things. But I am hopeful because otherwise things seem to be developing at least in the right sequence for him. Yesterday after OT we went to the creative discovery museum and spent most of the rest of the day. Outings are getting a big easier and harder at the same time. Easier because Jake's social skills are developing to a point that he is a bit easier to "control" and he tantrums much less, usually only during the normal tantruming times, like leaving a fun activity but I rarely have to carry him out lately, he just screams while he walks. Harder because I have two very mobile boys with completely opposite interests. I literally need eyes in the back of my head (and an extra me sometimes). These days I am exhausted, but hopeful.



****Pics: top: The scar on Jake's chin is from a nasty dog scratch. Sweet Bree stepped on his face while he was laying down on the floor. It was an accident. Last pic: The look on Manny's face pretty much sums up his attitude these days

Why am I still Angry?

Something has been bothering me since the family gathering with my parents and my father's side of the family. I keep trying to chalk it up to my own ability to be ultra-sensitive sometimes, but I'm having trouble getting it out of my mind. Usually this side of the family, which includes Mamaw and Papaw, is a more low-key celebration, and this year was no exception. As usual everyone was sweet and gracious when gift opening began, and it was a fun day, especially for the kids. Jake was in great spirits and showed no signs of freaking out even though he was the center of attention, which can sometimes send him to another room to be alone. So what bothered me so much?

One of my relatives asked me about Jake's reading because Jake was spontaneously spelling words and reading things here and there. I began to explain about hyperlexia, and about how Jake has a preoccupation with letters and numbers. This immediatly led to a "Well see there, he's smart! there's nothing wrong." comment from another relative. I'm used to that and went on to explain that sometimes people with learning disabilities can read at advanced levels, however they still have issues actually understanding what they read, etc. I was very very suprised to notice that everyone was actually listening to me. But then....

"Well that sounds like me! *har har har* I can't understand a thing I read either.. "
"I must have a learning disability too * har har har * cause I read and read and I'm still stupid."
"I reckon I've got that problem too... ha ha... "
and so on...

Suddenly everyone was laughing and giggling. I wanted to jump up and scream. I said something snide like "Thats really making light of something that is very serious to us." I really should know better, however, as much as I realize that it makes my family extremely uncomfortable that they have a "retarded" grandson/cousin/nephew, I just feel like I should just keep trying to educate, since I've totally given up on seeking these people as a source of support. I try not to let this incident bother me, but to be literally laughed out of the room when discussing my son's disability, something that is a constant source of heartbreaking challenges, self-doubt, and sometimes amazing miracles is just too much for me to keep inside. I'm over-sensitive, I'm aware of it, but somehow this particular holiday exchange made me glad that we were celebrating Solstice instead of Christmas with people who are accepting and compassionate.

I love talking about Jake's issues, sometimes pointing out particular small things to people that I am around that they may have not noticed otherwise. Some things that he does are so fascinating and amazing. There are so many misconceptions about autism spectrum disorders and I find that many people are just as fascinated and even (at least seem to) enjoy finding out more. The word "autism" is all over the media, yet very very few people know what it means and many are happy to discuss it more and learn what all the fuss is about.

I worry a lot that I am boring people or making them uncomfortable with my constant prattle. We were recently visited by my husband's cousin and her husband. They are young newlyweds and I found myself talking about Jake and autism quite a bit with them. During one conversation with the young husband I was mentioning the difficulties I had convincing Jake's Dad, my family, friends, and even Jake's doctor that I was sure that something was wrong. He said something like, "You have convinced me to take at least one early childhood development class when I go back to school before we have children so that I can recognize issues if they come up."

Wow, really? So my yapping, no matter how uncomfortable it makes my family, really is totally worth it. Educating one one-day dad makes it all worthwhile. Happy Honeymooning, you two.

Late Holiday Update

I haven't blogged in a while, and I would love for this blog post to be a positive one. Unfortunately, I'm not sure that it will be. All in all, we were able to weather the holidays pretty well.

This blog is about Jake, however it is also about my entire family, so other details always creep in. We've been very very sick and very very busy, so when giving the run-down of what Jake, and the rest of us, have been experiencing these past few weeks since the Holidays, it may not be the most uplifting reading, but I will try.


Because we were traveling to Macon to stay with friends on Christmas, we decided to have "Santa" on Christmas Eve morning. The boys got a toy each and handmade pants from Mom and ID bracelets along with sweet treats and chocolate. Jake was absolutely stunned to receive a Buzz Lightyear doll. Jake loves TV and books and develops great fondness for his favorite characters. However, the first feature length movie that he's ever taken an interest in has been Toy Story. Steve convinced me to get him a Buzz Lightyear action figure for Christmas but I was skeptical about his possible reaction. When opening the package he saw a picture of Buzz on the back of the box (Jake loves to handle and hold video packages or pictures of his favorite characters.. but I guess he's never really met any of them in real life, as he was about to do), and exclaimed "Buzz!" and looked quite happy to know that he was about to open a Buzz related gift. His stunned to silence reaction when he saw the toy is best seen in this video:





After we opened presents we packed luggage, kids, dogs and a turkey that Steve smoked earler that morning into the car and headed for Macon to stay with Kevin and Ariane, our good friends. We had pretty much invited ourselves to their home for Christmas and we were seeking solace from the rigors of a high-pressure family gathering. It was wonderful to be there in their peaceful home and they were amazing enough to share their space and family traditions with us. Even though we'd invited ourselves down for Christmas eve night, they asked us to extend our stay to Christmas night and we were planning on an evening of revelry when disaster struck.

Just as dinner was starting Manny started vomiting. He was sick a few times within that hour and a quick decision was made to take the kiddies back home despite the three hour drive. It was a good decision.

Manny was sick for 6 days and lost a lot of weight. I got sick on Sunday and was sick for a week (I lost a little weight, but its not so much of an issue with me). Jake got sick soon and was throwing up violently until New years. It just wasn't a great holiday for us. I mean.. it was.. but .. well.....

Now, after a week to recover, I am looking forward to OT with Cindy tomorrow and the arrival of OUR NEW NANNY! Yay! I posted an ad on craigslist and after talking to a few prospects decided to hire a sweet lady named Lacy. She is a darling and has already been here one day. After a rocky start she played happily with the boys and wore them out. She's going to come 3 mornings per week and I will groom dogs two days and sew in what is left of the time so that I can hopefully afford to pay her a little better than the small amount that I was able to offer up-front. I am VERY happy about this development.

More about the holidays and specific events later, but this is my best attempt at an update.